NBIA Alliance partner Hoffnungsbaum e.V. held their family conference in Hohenroda, Germany, May 1-4, 2014.
With a total of 76 participants from 5 countries, including 17 affected families as well as conference volunteers, speakers, physicians and researchers, the conference was a great success.
The conference theme was “Living with NBIA – a stony way” and focused on social issues. There were sessions on the rights due to disabled individuals and their families according to German social legislation and on craniosacral therapy as a relaxing therapeutic approach.
TIRCON partners Dr. Boriana Büchner, Dr. Ivan Karin (Friedrich-Baur-Institute at the Klinikum of the University Munich) and Caroline Biagosch (Institute of Human Genetics at the Technical University Munich) discussed the TIRCON patient registry, biobank and deferiprone clinical trial. In addition, Dr. Amande Pauls from the University Hospital Cologne updated the audience on the latest knowledge about the use of Deep Brain Stimulation in NBIA individuals.
Overall, the conference offered a varied program for parents, children and young adults. A trusted team of child care volunteers offered a well-balanced program of crafting, walks and party fun. Additionally, a guide was provided to take healthy siblings on a climbing tour.
Financial support for the conference was provided by the European Commission’s Seventh Framework Programme (FP7/2007-2013, HEALTH-F2-2011, grant agreement No. 277984, TIRCON), as well as health insurances Barmer GEK, BKK Dachverband, DAK, GKV Spitzenverband, Securvita and Techniker Krankenkasse